Euthanasia: Application of the lesson from cultural history (Part 2)

by Paul Russell

News Weekly, April 23, 2016

In the last issue of News Weekly (April 9, 2016), artist and activist Chips Mackinolty explained why Aboriginal Northern Territorians were determinedly against the introduction of voluntary euthanasia.

St Andrew gives Joan Hume

a lesson in reality.

Mackinolty is worth quoting further as a prelude to this second and final installment:

“Due to complex ways in which Aboriginal belief, social and cultural systems do not ‘match’ those of non-Aboriginal Australia, external reassurances about the ‘voluntary’ nature of the legislation will be unlikely to lessen the very genuine cultural misgivings and fears Aboriginal people have about the existence of the act … and the evidence to date is that those worldviews have already persisted for a substantial period despite long-term contact with non-Aboriginal worldviews. This persistence of such worldviews is not amenable to ‘education programs’ in general … no matter how much support and good will is afforded by such a program. People, no matter what their cultural background, do not ‘unlearn’ their worldview so easily.

“I do believe that there are very real risks to the health of Aboriginal people, by virtue of the existence of legislation: it’s what people believe about the legislation, not what may actually be contained within it. Frankly, I do not think that Aboriginal people need another potential ‘agency’, let alone cause of death.”

There are perhaps a few ways one can look at this unique slice of Australian history. I am tempted towards the conclusion that, had then Northern Territory chief minister Marshall Perrin conducted a longer consultation with Aboriginal Territorians, the Rights of the Terminally Ill (ROTI) Bill would not have become law. This is not to criticise Perrin: often these things can only be fathomed in the rearview mirror.

What such an outcome might have had later on – given that without ROTI the Federal Parliament would likely not have removed the powers to determine such matters from the three territories – is guesswork. I believe, however, that the Australian Capital Territory might well have raised a bill and that it would probably have passed.

There are more important questions to consider here. Chips Mackinolty, it seems, would have removed the NT euthanasia law based on his observations about its effect on the Aboriginal population alone. From his evidence he was clearly representing the vast majority of Territory Aborigines and his testimony was beyond reproach. His work was a big influence in the federal parliamentary debate that eventually nullified ROTI, but it was not the only consideration.

Another worldview

However, it is legitimate to ask whether a public policy decision about as momentous an issue as euthanasia can be scotched by reference to and under the influence of the deeply held concerns of a minority? After all, in recent history we have willingly halted or shunned developments found to pose a threat to the environment in some way? Surely the precautionary principle has far more potency and application to human life?

In terms of euthanasia, we might think of a “minority” as being the same or similar to the generic term “vulnerable people”. I am not sure that we should conflate the two in this instance. On the basis of what Mackinolty calls “Aboriginal worldviews”, I would suggest that the most proximate community concern would be for people living with disability.

I base this solely on the fact that people living with disability will have a developed worldview and life experience, whereas vulnerability can be episodic, can affect us all and has no community nexus.

(Note: I am not comparing Aboriginal issues or communities with disability issues or communities; I am merely trying to find another lens through which to view the euthanasia question.)

Green light or hazard lights?

Or, is it acceptable that, acknowledging these concerns, we still go ahead and give the green light to euthanasia? But, had Federal Parliament ignored the concerns raised by Mackinolty, it would be hard to argue that it had not thereby behaved in a patronising manner towards Aboriginal Territorians.

Again, according to Mackinolty, there was no way that he could see of assuaging their deeply held concerns: “People, no matter what their cultural background, do not ‘unlearn’ their worldview so easily.” In other words, there was no “quick fix” that legislators could adopt to make the problems he raised go away.

Something similar can be found among people living with disability. Not a homogeneous unit by any means, yet still we find deeply held concerns about euthanasia and assisted suicide based on lived experience of being treated as though “better off dead” by others and, in particular, by some in the medical community.

Such experiences provide a backdrop or “worldview” that is not simply “unlearned” by patronising assurances to the contrary; especially when the discrimination and lack of meaningful life choices continues to be the experience.

And yet, such patronising assurances are precisely what we heard last year in the ABC Q&A program on euthanasia, in comments made by journalist Andrew Denton in response to a question on disability from audience member and disability advocate Joan Hume.

After misapplying the long-held concerns about the effect of euthanasia and assisted suicide on the vulnerable, infirm and disabled, Denton talks at Joan and says: “Your fears are very real, but that does not make them a reality.” He later repeated that very phrase on national radio.

Would Denton have had the temerity to front Chips Mackinolty or Dr Gondarra in the late 1990s with a similar quip in response to their claims? I seriously doubt it. On Q&A, Dr Karen Hitchcock responded to Joan Hume’s question in total agreement. Hitchcock speaks from vast experience and common sense, but I guess that does not make her concerns a compelling reality either.

It is easy enough to dismiss other “realities” if we can construct a framework that denies or extinguishes the potency of any argument arising from those realities. To my knowledge no one anywhere in the world has ever said that the concerns for vulnerable people or for people with disabilities, if euthanasia were ever to become law, is based on abuses reported to peak disability and elderly-care bodies in places like Oregon, Belgium and the Netherlands.

Denton’s false assumption

Denton claimed that this is what was represented at HOPE’s Adelaide conference last year. But it is not true. Denton made an assumption that this was the basis of our argument. His lack of practical experience in the field let him down. The vulnerability argument predates legal euthanasia and assisted suicide. It has been found to be the most significant blockage to euthanasia and assisted suicide in reports and parliamentary inquiries around the globe for decades.

Risks to vulnerable people remain the focus of every debate, which is testament to the fact that there are both risks and vulnerable people. Just because Denton visited the “brave new world” and returned with a utopian vision of bliss does not change the reality. Joan’s fears arise from her experiences as a person living with a disability here in Australia; they are real and it would be that reality right here at home that would come into play if euthanasia were ever law; not some patronising assurances from a long way away.

Drawing us back to reflection on the work of Chips Mackinolty. I probably have little in common with his world but, from my few years living in the Territory, perhaps more than many. To me, he is an Australian legend because he stood up for what was right and for the many voiceless Territorians, even though his own worldview painted a very different picture and pulled him in a different direction.

I was tempted to write that Mackinolty stood up “for the underdog”. That’s a great Aussie reference, but it doesn’t fit here. Why? Because there is a real risk that we look at the principle of vulnerability, of genuine and deeply held fears and concerns from a “lowest common denominator” perspective. In other words, there’s an implied condescension to “the little folk” or whatever other diminution that comes to mind. This only re-enforces the idea of people being a “burden” on society.

Human rights may well be partly about a debt owed one to another because of our common humanity but it is also about inherent dignity that, at its best, seeks to elevate the other. Deficit thinking is not the right approach and I don’t believe that Mackinolty would have characterised his work that way.

I put it to you that by listening to Mackinolty and taking the concerns he raised on behalf of Territory Aboriginals that our lawmakers adopted a “highest common denominator” approach; the precise opposite of the above. In other words, they were careful to make space for a voiceless and challenged community to share its concerns, not because they were inconvenient or different but because they are part of our human story that cannot fail to provide insight and benefit to the whole nation. When Gondarra talks about magaya, the state of peace, freedom from hostilities and justice for all as a consequence of good law, surely we should hear that wisdom!

Kevin McCloud, the presenter of the TV series, Grand Designs, once steered viewers through the design and development of a home being built by a young British veteran of the Afghanistan conflict who had lost limbs in that conflict. With many design features built specifically for his access needs, McCloud commented to the effect that building design for people with physical disabilities actually benefits everyone – a “highest common denominator”.

I’m arguing that listening well to those concerns that arise from a deeply held worldview, and accepting that to ignore them is to risk damage to society, we raise a benefit. We actively elevate and esteem those that we listen to. We enhance our understanding by applying empathy. We destroy barriers through gaining understanding. We draw closer together.

The alternative is hard to comprehend. I don’t know what Joan Hume felt that night in the ABC studios when her perspective was diminished and virtually dismissed by Denton.

What I do know is that, if we ignore the worldview and life experience of those who would say “no” to euthanasia or assisted suicide because of specific, recognisable and legitimate concerns, based upon years of lived experience, we sow division. We endorse the supposed “right” of an elite few at the clear expense and alienation of others and we entrench discrimination of the vilest kind.